Actively Recruiting
Congenital Aniridia Patient Questionnaire
Led by Assistance Publique - Hôpitaux de Paris · Updated on 2026-06-02
100
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
Sponsors
A
Assistance Publique - Hôpitaux de Paris
Lead Sponsor
U
URC-CIC Paris Descartes Necker Cochin
Collaborating Sponsor
AI-Summary
What this Trial Is About
Congenital aniridia is a rare genetic eye condition characterized by a partial or complete absence of the iris. It affects multiple parts of the eye and can include glaucoma, cataracts, corneal scarring with new blood vessel growth, foveal underdevelopment with eye movement issues, and optic nerve underdevelopment. The disease varies widely among individuals and can also be linked to severe systemic syndromes. This study aims to identify both eye and systemic symptoms in people with congenital aniridia and assess their understanding of the condition through a one-time survey. Participants will complete a survey created by ophthalmologists at a specialized hospital center. The survey is designed to collect information on the manifestations of congenital aniridia and the patients' or their parents' knowledge about the disease. Adult patients who can answer independently and children whose parents can respond for them are included. The survey is completed once per participant. During the study, researchers will collect data from the survey responses to evaluate eye and systemic signs of the disease, patient autonomy, and knowledge of their condition. The main outcome is the identification of ocular and systemic manifestations over 24 months. Secondary outcomes include understanding patient and parental knowledge and factors affecting this knowledge. Participation involves just one survey completion, with no additional treatments or procedures.
CONDITIONS
Brief Title
Congenital Aniridia Patient Questionnaire
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Any patient 18 years or older with congenital aniridia able to answer the survey independently
- Patients under 18 years old with congenital aniridia whose parents can answer the survey for them
- Adult patients or legal guardians and minor patients who are informed and do not oppose participation
You will not qualify if you...
- Patients with neurological disorders that prevent them from answering the survey, except if parents can answer for minor patients
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote) for eligibility assessment and consent
Duration - Single timepoint
Participants complete a one-time survey to identify eye and systemic manifestations of congenital aniridia and assess their knowledge of the disease.
1 visit (in-person or remote) to complete the survey
Duration - 24 months
Participants are observed over 24 months to assess ocular and systemic manifestations and knowledge outcomes.
No scheduled visits; data collected through follow-up surveys or medical records as available
Trial Site Locations
Total: 1 location
1
Hôpital Necker-Enfants Malades
Paris, France, 75015
Actively Recruiting
Research Team
A
Alejandra Daruich, MD, PhD
H
Hélène Morel
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
Frequently Asked Questions
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